January 10, 2016

Holiday Mash-Up

Ahh, the holidays. They go by so dang fast, especially when you live in this house. Never a dull moment. A lot has happened in the last two months, so here is a basic mashup in reverse order:

Yes, our Christmas lights just came down, much to the wonder of our neighbors. Aaron and I are attempting to live more liturgically in 2016 and with that means we are celebrating the twelve days of Christmas, meaning it doesn't end until the Epiphany (celebration of Wise Men bringing gifts to Jesus). Our doorbell still plays "We Wish You A Merry Christmas" and we listened to Christmas music long after the secular world is returning to plain old winter. I like it.

On New Year's Day Max informed me that this is the year he will have been around for a whole decade. A decade, for real. I kind of just stood there, mouth agape, as I attempted to process this information. I have had a kid for a whole decade? I have lived with the knowledge of SMA for 9 years? I still feel so new at it - parenting and SMA. Just. Wow. We spent New Years Day quietly indulging in games and movies in our pjs. It was glorious, especially compared to our New Year's Eve, and the rocking party we had, just kidding. Actually Alex and I spent 8 hours at the ER and didn't make it home until almost 9pm on NYE. Not quite the evening I envisioned.

New Year’s Eve, a time of parties, fireworks, adult beverages and food. Unless you are at the ER. Then you are only indulging in the water in Styrofoam cups the nurse was kind enough to bring you and trying to decide if you should eat the protein bar you brought or hold out hope for discharge papers. All of this actually started prior to Christmas with a horrific constipation situation, that was resolved (like kept us home from mass due to collateral damage resolved). Alex began crying everytime he needed to or did urinate (not poop, urinate). We have been back and forth to the pediatrician, had xrays, continued to clean out his bowels (thinking it may somehow be related) and nothing stops the pain. He is fine most of the time, but screams bloody murder when he pees. Finally, I gave up from frustration and exhaustion (he wasn’t sleeping at all at night just crying) and took him to the ER on NYE. Nothing. They couldn’t find one single thing wrong with him. This kid has been cultured, ultrasounded, xrayed, still nothing shows. We are anxiously awaiting his urology appointment on Monday. He has been on two different meds with no help. The only thing that seems to make a difference is two days I have given him tons of extra water via his tube and he sleeps those nights. Dehydration, perhaps?

Now all of this would have been enough on its own except that for just prior to Christmas Alex had a cold and the rest of our household appeared to remain symptom free, until about five days prior to heading to FL for Christmas. Max started with this weird cough and not digesting his food. After two days he seemed normal, except for the digestion and we decided to press with our trip to my parents in FL. Of course, the boys would have been devastated if we canceled. We got to FL on the 23rd and were very busy settling in and prepping for Christmas. We ended up missing Christmas Eve Mass due to Max acting “off” and coughing a bit again. On Christmas morning we did treatment and got him up to open gifts and he only lasted about 30 minutes. He could not tolerate being up in his chair. We put him back in my parent’s room and he was fine, tried again and he couldn’t handle it. We even tried just laying him on the couch in their living room and he had trouble breathing. Aaron and I made the tough decision to load up and head home, on Christmas, so while my dad made an amazing meal, family stopped by and my mom entertained the boys, Aaron and I loaded the trailer. We ate a late lunch with family and headed out. My awesome parents loaded up in their car and followed us, just in case there was an emergency and my brother and Aunt Tammy and Uncle Greg stayed behind to clean everything up. We got home, uneventfully, around 2am. This was definitely not the Christmas we had envisioned. Thankfully, save one small fever, Max was fine in 48 hours (which was great as we were in full throws of Alex’s stuff, which had been escalating over this time).

Needless to say, we didn't get any really good family pics over our short Christmas visit, but here are some to prove we celebrated:

Of course, no visit would be complete without some donkey time and my parents have added a miniature donkey to their household. The boys named her Lucy.

Now prior to all of this we had quite a surprise on our hands. At the beginning of the year my Aunt Tammy nominated the boys for a dream vacation to Give Kids The World in Orlando with tickets to all the area theme parks via an organization called Baking Memories For Kids. This is a fantastic organization that a man by the name of Frank Squeo started after fighting his own battle with cancer, making a promise, that if he survived his battle he would make it his mission to fund children’s dream vacations. Now, that is all fine and good, we “say” a lot of things when we are in the midst of crisis, but he actually did it! This organization makes and sells chocolate chip cookies to fund these trips. My aunt saw them featured on the Today Show and ran with it. The boys were surprised by Frank via fire truck on December 8th. It was such a fun day. The boys just loved Frank (and so did we)! A lot of people came out to see the announcement for support and it was covered by all three local news stations. We head down for our trip late February and the boys already set up a dinner date with Frank at T Rex Café. This organization has been such a dream to work with and rely totally on volunteers for the cookie baking. I encourage you to check them out. The only sell in the fall every year and the cookies make great gifts.

Thanksgiving, Aaron’s first one home in three years was a quiet affair. It was just me, Aaron and the boys. We had a good day. We knew lots was in the pipeline for the upcoming weeks, so it was nice to chill out and relax. Here are some pictures from November. The one of Aaron and Alex was taken by our friend Matt on the jet. Below that are some pics from my Friend Josie with Josie Photography. She is just the sweetest!